Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Fulcrum halts losmapimod development
Fulcrum halts losmapimod development by June Kinoshita This morning, we received news Fulcrum has decided to halt its development of losmapimod (see press release below). Fulcrum’s decision was based on analysis of data from the Phase 3 REACH trial. The REACH data reported small improvements in Reachable Workspace (RWS) not only in people taking the…
Fulcrum halts losmapimod development
Fulcrum halts losmapimod development by June Kinoshita This morning, we received news Fulcrum has decided to halt its development of losmapimod (see press release below). Fulcrum’s decision was based on analysis of data from the Phase 3 REACH trial. The…
Upcoming Events
Featured
Young Adults – Art & Journaling
Zoom Virtual Meeting , United States8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art,...
Parents’ Roundtable – Fitness training with Mitch Wade
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse...
FSHD University: Insurance Coverage for Costly Rare-Disease Treatments
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.